Nearly half of respondents in the online survey of 1,385 PCOS patients from 32 countries visited three or more doctors before getting answers, and a third of women said it took more than two years to get a proper diagnosis. The results were published last week in the Journal of Clinical Endocrinology & Metabolism.
PCOS is estimated to affect up to 18% of women of childbearing age. Despite how common it is—and the fact that it’s the leading cause of infertility—it remains misunderstood and under-recognized by patients and doctors alike, say the study authors.
Women who have PCOS are at higher-than-normal risk for a variety of physical and emotional health problems. To be diagnosed, a woman with PCOS must have at least two of its three key features: small ovarian cysts, elevated levels of testosterone, and irregular or missed menstrual periods. A woman will usually realize when her period is out of whack, but unless she gets an ultrasound or hormone test, she may not even know she has cysts or elevated testosterone. She may be having related complications, however, including trouble getting pregnant, excess hair growth, miscarriage, weight gain, headaches, or mood changes.
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Those issues are often what prompt women to seek medical care. Even then, they don’t always get the answers they’re looking for.
Only a third of women surveyed reported feeling satisfied with their overall diagnosis experience. One reason for the low rate? About 35% said they saw three or four health professionals before finding someone who could help, and 12% saw five or more.
Another reason was the time it took: Only 43% of women were diagnosed within six months of seeking medical attention, while about 34% said it took more than two years.
Co-author Helena Teede, PhD, professor of women’s health at Monash University in Australia, says it’s important that awareness about PCOS be increased.
“Despite the misleading name, PCOS is not primarily an ovarian condition, but instead is a hormonal disturbance with diverse health effects that is largely inherited,” Teede said in a press release. “The process of diagnosing PCOS needs to be improved, and the diverse set of metabolic, reproductive and psychological features need to be understood and addressed.”
It was common for women in the survey to report waiting months or even years for a diagnosis of PCOS. When they finally got one, only about 16% of respondents said they were satisfied with the information they received about the condition.
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While oral contraceptives are the first line of treatment for PCOS, lifestyle changes (such as exercise and healthy eating) are also recommended for losing or maintaining weight. However, 43% of women said they were dissatisfied or indifferent with the information they were given about lifestyle strategies, and 45% said they received nothing on this topic at all.
And despite the fact that PCOS is a chronic condition, more than half of respondents reported getting no information about long-term complications or emotional counseling.
PCOS has long been known as a health condition doctors often miss, but this study shows just how frustrating it can be for the women affected by it—and why it’s so important to make sure your doctor takes you seriously if you suspect something’s wrong.
“There are clear opportunities to improve awareness, diagnosis, and health outcomes for women with PCOS,” Teede said. She adds that the survey results, along with new international guidelines and education initiatives currently in the works, should help improve care around the world.